Disappointed With Hospital Follow-up

[Janey]

I've spoken on here a lot about how we have a great POTS doctor in the UK - Professor Mathias. As he's so great, it seems that he's very busy, and he has a whole range of junior doctors who see his patients for him, for follow-ups and help.

Anyway, I went for my hospital follow-up two days ago and had a consultation with a Dr Ingle who I hadn't met before. He basically told me what I knew already -- that I had an extremely straightforward case of POTS caused by EDS III, and had I taken all the measures they'd told me to take when I left the hospital last time (eg salt, hydration, tilting the bed, cold showers, constricting hose, cooling vest etc etc) I said that I had but that I was having big problems with work and staying employed when my symptoms were so bad and I felt that I needed to start on medication and I had heard excellent things about midodrine.

He then said that he wouldn't give midorine to me "now" but if I made more practical lifestyle changes and they didn't work, I could call him up in a month;s time and he would prescribe it over the phone to me. Frustrating considering other POTsys in the UK I've known who have been given it straight away, AND the fact that my situation is urgent -I need to try ANY med that has the possibility of helping me to gain employment and stay employed so I can support myself financially..

Next, he said that "no-one really knows whether POTS was a "real" illness or not," but that he was "prepared to believe that there was something scientific in it." He kept making references to how I shouldn't let my "psychological state get out of control." I said "What do you mean, are you saying it's all in my head?" And he said "No, no, I'm just saying that if you think you will have a crash, you WILL have a crash."

I NEVER think like this - and I TOLD him so - I am THE most positive person when it comes to POTS. I wake up in the morning and overnight have completely forgotten that I have problems standing up/with tachy/with digesting food, but when I stand up and it hits me, THAT'S what reminds me, NOT loads of anxious apprehension where I work myself up into a state.

Finally, my Dad who was there with me asked 2 questions - the first one about the "prognosis" of POTS. Dr Ingle's answer? "It'll definitely go away...I can't say when - it could be 6 weeks, it could be 16 years, but it'll go... it's a blessing in a way - it makes you much less likely to die from a heart attack." My Dad smiled and looked elated - FINE - but I need him to understand how I've been feeling for the past four years so that my family can understand when I can't make it to an event or occasion, or why I have had problems staying in work - NOT be told by a doctor that I'm suffering from an illness that is actually beneficial to me!

And just when I felt like my "experience" of POTS couldn't be any more belittled, my Dad asked: "what's the situation with POTS and pregnancy?"

"If anything, pregnancy cures POTS... you will never have felt better," says Dr Ingle! "It forces the autonomic system to function normally."

Have I been on a different planet the last few years with this?! Is POTS caused by EDS really just a "flash in the pan" that will definitely go away? Am I really "lucky" that I have it? Is it not really a verifiable illness? Just a hunch that someone had somewhere along the line, but nothing to be taken too seriously?

I'm so sorry that I'm angry, but I just can't understand how I can have struggled with this for years and sit in front of a doctor who has no idea what it is like for me and is telling me to go forth and multiply and live my life normally when I know there is no chance of that?! It has changed my relationship, my career, my friendships, my family...my life! I just don't understand.

[toddm1960]

Dump this guy and move on, don't waste a mintues worth of energy on him. Remember there was a time when the biggest brains on the plant said the earth was flat, and in the 50's people with polio were told they had psychiatric paralysis. Fire him and move forward.

[brownsea]

im glad i didnt see him. what is he talking about?!

im pleased i wasnt referred to him, im being seen at kings at present, where i had my tests done. dr d has been extremely helpful from noting down that i should be given extra time during tests, to explaining things in detail.

im sorry you have had to go through this. i do think in perhaps ten twenty years time pots will be recognised more and this silly labels wont exist anymore.

xxx

[DizzyMe]

Hi Janey,

I am under Prof M too and am going for my 2nd follow up next week and hoping now that I don't see Dr Ingle.Wow what a horrid appointment,I really feel for you.

Its disapointing that Prof M has someone like this working for him as he doesn't seem to share the same understanding of the condition and how debilitating it can be.

I didn't have the same problem getting midodrine from Prof M but unfortunately it seemed to be giving me side effects and had to stop taking it.Maybe if you emailed him directly or left a message with his secretary he could prescribe it now.(I think I would also mention the strange Dr who seems to think POTS is a blessing!)

I have EDS/POTS too and the POTS developed following my pregnancy but Prof M did mention that pregnancy can improve things,which I didn't understand

I will be asking about the EDS/POTS prognosis next week,I have worried that if I have always had EDS will I always have POTS.

I would definately ask not to see this Dr again and also report your experience to Prof M.

Melanie.

[juliegee]

Janey-

Rubbish! So sorry this happened to you- what a waste of time. You'd have been better served staying home.

I hope our dear Flop reads this. She had a HORRID appt. with one of Prof M's colleagues- may be the same fellow. I hope she chimes in with her experience.

Hugs-

Julie

[TXPOTS]

Oh goodness... I am so sorry to hear about your frustrating appointment. I have had a few of these demeaning appointments before being officially diagnosed with POTS. My only advice is to turn around and never look back. Put this appointment out of your head and be persistent in your quest to find a doctor who stays more current on the latest POTS research. It is NOT you, it is him. Hugs!

[erikainorlando]

Right there with ya sister. I have been told so many stupid stupid things about autonomic dysfunction. I have to let it go...otherwise it eats me alive.

My most recenth was that my POTS was the result of an illness i had 9 years ago...funny I didn't have any POTS systems until after a virus in 2008. Then I was told my neuromuscular problems were psychogenic....................yeah..and htis was by an autonomic specialist.

I have so much nerve damage they can't tell what's what...but in the mean time they are totally invalidating how ill I am. AND then my mom or whoever is with me think i am nuts and just a complainer.

I never complained about all the nerve damage from GBS (my illness 9 years ago)...so if I am complaining now...they should really listen! My primary neurologist really listens...he just can't figure out what is wrong. But I traveled many miles to a famous autonomic speecialist....and was really discounted. I can't think of anything worse than hurting as bad as I am and I am sure you are and being discounted or told it is anxiety.

MY HR WAS 188 when they finally did a holter monitor....after I was told it was anxiety!! Well they changed there tune then...

Sorry but this all hits kind of close to home...I am tired of being discounted with this illness. Proving I am sick. I would love to be well....I lost a job, a relationship, my kids are suffering, I can't compelte my masters program and the list could go on....

OKAY...enough from me...(hugs)

Erika

[persephone]

UK POTS Doctors have never done anything to help me, not EVER. Until now. I have found a new consultant electrophysiologist who is absolutely brilliant in the south of England.

PM me for details.

I will NEVER go to see Professor Mathias again. He stood by and watched as I almost lost my entire career.

Luckily I have a Doctor who is worth his weight in gold, and is informed.

POTS is verifiable. It *is* a real illness. We cannot cause our own tachycardias. Our own hypotension. It doesn't work like that.

Get out of the London hospitals NOW is all I can say- they never did me ANY good.

Now I have my life back!

[miranda]

I am in the south uk , so would be interested to know who the specialist is.

I have been seeing a neurologist who has been brilliant and diagnosed me with dysautonomia,

she is the nicest person I have ever met.

[flop]

Hi, sorry I didn't see this thread until now. Yes it was Dr Ingle that I had my nightmare appointment with in November 2009. He is a consultant neurologist so I am not sure exactly how the clinics work or why the patients are shared between him and Prof Mathias. Previuosly I had either seen Prof Mathias himself or his registrar (resident).

When I saw Dr Ingle I was very frustrated, for a start he didn't introduce himself so I didn't know his name or if he was a trainee or a consultant. It wasn't until I got a copy of the clinic letter 6 weeks later that I found out his name.

I have POTS and EDS so have been told by both Prof Mathias and Prof Grahame (EDS specialist) that I am likely to have some degree of POTS for the rest of my life but that it can be controlled with medications. Dr Ingle informed me that I got POTS from a growth spurt in my teens and that I would grow out of it by the time I was 23 or 24 - interesting, I was 25 when I became ill and i am 30 now!!!

I had seen Prof Mathias in May 2009 and he had written in a letter to my income protection insurance company that the next step would be to get me admitted for repeat autonomic testing and a trial of either octreotide or pyridostigmine. He also wrote that he thought pyridostigmine would be a bad idea because of my GI problems. I was expecting the November appointment to baiscally set up that admission.

No, Dr Ingle told me that I didn't need any medication for my POTS (even though I am so ill I haven't worked for nearly 2 years). He also went through my medication list and told me to double the dose of Ivabradine (I was already on the maximum dose) and to stop all of my other medications (Paroxetine, paracetamol, codeine, fexofenadine, ranitidine, montelukast, salbutamol inhaler, adrenaline inhaler, epi-pen) as they were the cause of my symptoms. I don't function at all without my allergy meds and only use inhalers very infrequently so they can't be the "cause" of my tachycardia.

When I asked about the repeat testing I was told that my tests were only done in January 2008 why would they need doing again so soon. I tried to explain what Prof Mathias had told me but the dr talked over me. He said that maybe he would repeat my tests in 2011 but not before then.

At that point I got so frustrated that I cried. Uh-oh, big problem! Suddenly I was told I absolutly must not stop my paroxetine as i was clearly depressed and that I needed CBT (cognitive behavioural therapy). I tried to explain that I had already been evaluated for CBT through the pathways to work scheme and had been told that I didn't need CBT. Again the dr wouldn't listen to me.

I cried most of the way home on the train. It was so hot and I was so dizzy that I spent most of the journey sitting/lying on the floor in the vestibule where it was slightly cooler. The emotions and crying probably contributed to me fainting as I went back to my seat to get my coat etc before getting off the train - cue a 999 call and a trip to hospital with a broken wrist and dislocated hip.

I was so angry and frustrated that the dr just wouldn't listen to me and seemed to have no idea what physical problems I have. He wrote in his letter that I "admitted I was phobic about going out alone" - umm, how come that every single day I make myself go out shopping or for a decaf-coffee just to get out of the house, phobic???? He also didn't write the medication changes that he told me to make. Both my cardiologist and myself wrote to Prof Mathias to complain about the appointment - apparently Prof Mathias could see no reason for the medication changes and I "misunderstood"!!!! (I write everything down during appointments so I have the notes I made that day". As a result of the complaints Prof is repeating my testing next week and I will be seen in clinic.

Unfortunatly in the UK we have very little say in which doctor we see, we can't "fire" a doctor or even get to see the consultant. I wasted a whole year getting the run-arround at my local hospital because my cardiology consultant was away both times I had appointments and I ended up seeing junior doctors who had no knowledge of POTS at all.

I did go for a CBT assessment in February this year (I knew if I refused they really would think that I was crazy). The therapist confirmed that i am neither depressed nor anxious but that I am physically ill and need treatment!!!!!

Persephone's consultant on the south coast sounds fantastic, I wish I lived a bit closer so I could justify getting referred to him.

I think that the doctors who are interested in research often aren't that interested in actually treating patients so a big name hospital doesn't mean the best clinical care. What we need are doctors who are knowledgable about POTS, keep up to date with the latest experimental treatments and are willing to try out many different medications until they find the ones that help an individual patient the most. We are all different so there is no good just prescribing the same meds for everyone.

Rant over and hugs to Janey!

Flop

[lauralulu]

Wow, I am so sorry you have both been through such awful and frustrating appointments! What a nightmare, it's bad enough as it is waiting for these appointments and needing the treatment without being told rubbish like what you guys have been told. I'm so annoyed for you!

[Janey]

Flop... thank God you wrote that! I am so reassured... I'm going to send that to my Dad if you don't mind, so he sees that someone else thought Dr Ingle was being thoughtless. He's now my dad's favourite doctor because he's confirmed to my Dad that I am actually able to work and apparently "fitter than most people." So technically he's done me absolutely no favours.

I've also emailed Mathias' secretary Catherine Best and Professor Grahame to see what he thinks about someone saying POTS secondary to EDS will "definitely go away."

Again, thanks so much.

Janey

[Janey]

One other thing -

I think they just took all my test results off for "research" and didn't consider telling me what they were! Only confirmed what I already knew I had...

[toddm1960]

For years to touted the European/Canadian medical systems........scares me now. No control over a worst than bad doctor....wow, I'm floored. Thanks for being honest.......can't beleive I'm going to say guess I'd rather have insurance companied screwing me over than to have no control over what doctors I can see. I've seen 30 doctors in the past 5 years getting dx'ed, I just kept firing them until I found a team that was willing to look deeper.